Doctor: just say no

I was confused. Perhaps, I needed another cup of coffee. The chart did not make sense. Ellen, who I was about to see because she was transferring her care, was receiving medication for cancer that was a simple pill; inexpensive, with few side effects. What confused me is that it was obvious the therapy would not work.

Baffled, I called the oncologist who had been treating Ellen for two years. A nice guy, we have met causally at meetings. He is well trained, aggressive and compassionate. He knew immediately of the paradox in Ellen’s records; she was receiving a very questionable drug. He explained the problem.

Ellen had refused the correct treatment, chemotherapy, because of side effects. She did not want hair loss, nausea, fatigue or the risk of infection. Ellen was so definite in her opinion, that she had demanded the worthless pill by name. Therefore, because Ellen had practically ordered the therapy, the oncologist had written the prescription.

I have practiced medicine long enough to remember the days of paternal care. Back then, the doctor was not only the one with the degree, he was the boss. The physician said, “jump” and the patient said “how high?” It was our healthcare culture that the doctor had the experience, the judgment, the wisdom. The physician determined the “right” treatment and the patient’s role, the “sick role,” was to comply. The doctors “orders” were, well orders.

In reality this did not work. Patients who do not understand their medical situation, are not invested or committed to their care. They did not take their medicine, show up for therapy or, often, see a doctor at all. The revolutionary shift, buttressed by massive e-data, has been toward patient involvement and responsibility. The concept of “informed consent” is no longer simply on the consent side, but on being informed. Patients demand to understand and are intimately involved in each decision.

However, often I see a further change, an imbalance toward the patient side of the equation, which threatens to undermine sound decisions and good care. I see doctors providing therapy that they think is a bad idea. In effect, I see patients ordering treatment.

We all know of the example of antibiotics prescribed for the common viral cold, because the patient insisted, “something be done.” Chemotherapy given to patients with advanced resistant cancer, even though it will likely shorten life. $50,000 automatic defibulator units implanted in demented 96-year-olds, so that they may die as their bodies are contorted by electric shocks. Distorting plastic surgery addictions fed by lucrative surgical excess-practice. Radiation therapy for radiation resistant illness. Kidney dialysis given to patients in complete, irreversible, liver failure. Dozens of excess consults in the last month of life.

There is a basic idea, which many physicians seem to have forgotten. This concept describes the relationship of patient and doctor, even in the post-paternal era. Doctors order therapy. Patients consent to therapy. Patients cannot order a physician to give therapy.

This is the final check on medical decisions. The physician has the sophisticated understanding of health science, as well as the emotional distance to be objective. The patient understands their own limits and desires, how a specific therapy will affect their lives. To implement decisions properly the physician and patient must communicate clearly and completely; an interchange of ideas. In the final step, the doctor recommends, and the patient consents or refuses. The doctor orders, the patient complies by allowing care.

In Ellen’s case, where we began, the medical relationship has been distorted. The patient is ordering and the doctor complies. The result is bad decisions and worse care. Ellen was getting a medicine, which, though it has few side effects, has no benefit. Therefore there are only side effects; a medicine which can only bring harm.

Even if this particular medicine does not bring Ellen any direct injury, the disruption of the relationship and decision process, is a serious problem. The likelihood of careful analysis and high quality communication is diminished. Ellen has heard the message that she can and, perhaps, must demand the “”right” care. Ellen and her doctor did not understand their roles. The resulting confusion will result in chaos during future health crises, when complex decisions will be needed and emotions will run high.

Doctors must, at certain critical times, “say no.” Clearly part of the wisdom, the art of medical practice, is being able to decline a patient’s requests with skill and compassion. The approach should not include, “No! What a stupid idea!” Rather, it requires a gentle systematic conversation about the realities of the situation and what can or cannot help. This sort of negotiation is central to good medical practice.

However, despite best efforts, there will be moments when each practitioner must draw a hard line in the sand. Giving harmful or useless therapy, or intentionally denying comfort, undermines patient-physician communication. This threatens medical care. This is not just about being a steward of resources, but about building and maintaining a healing relationship.

I said “no,” to Ellen. Actually, we spent an hour discussing her case and choices. I explained that the pill was not going to help; I avoided the label “less than worthless,” though I was tempted.   We agreed to explore the idea of chemotherapy at her next visit. It seemed to me that our conversation went well.

Perhaps we have established an understanding on how we will make decisions together.  She talks, I listen.   I teach, she learns.  I advise, she considers and consents… or not.   It is a foundation on which to build a cure.



  • Doctor: Just try listening, understanding and communicating options for an individual's best care.
  • Dr. L Schouten
    "Actually, we spent an hour discussing her case and choices" Thanks, Jim. Caring for our patients often takes time.
  • You did the right thing at least in my eyes.
  • Liz
    What you suggest works when you have informed doctors. When you do not there is a problem. Often you do not find out you do not have informed doctors until you ask for a certain treatment or ask certain kinds of questions. With one of my many cancers rituxan and bendamustine is one of the standards of care. My onc ordered R-CHOP. Didn't even bring up R&B (turns out he did know about it). I brought up R&B. He didn't want to use it because he "always used R-CHOP" and because "he preferred to wait several years after something becomes standard of care to start to use it to see if there are any side effects we need to know about". I insisted because the clinical trials and ASH presentations indicated that it was a bit more effective than R-CHOP, an average longer remission, and an "easier" chemo to do. Fortunately for me he caved and agreed to order that. Had I had to change oncologists to someone less conservative it would have delayed treatment several weeks. I did finally change oncologists in the end as I didn't want someone that conservative but I waited until treatment and immediate follow up was over. Sure there is a difference between the situation you were presented with (snake oil woo) vs a disagreement about which effective treatment (you preferred to use one and the patient wanted a different one)), but there is a place for patient involvement in decision making and at times the patient is more current than the onc. Not a preferred situation, but there is locally here an onc who had not heard of rituxan which had been the standard of care for years (eg the R in R-CHOP). Also the onc has the opportunity to fire a patient the patient (just be careful now that you are in a giant practice that this does not fire the patient from every onc in your extended practice - a huge danger with the consolidation of practices into giant ones) has the opportunity to fire the onc. Also it would seem to me if someone is stage 4, nothing left to extend life that also didn't compromise it considerably, then going along with woo/snake oil (that didn't have nasty side effects) for psychological reasons might have it's place.
    • I agree that with the terminally ill the psychological part is very important. Even the terminally ill want to hang on to hope, a hope that a miracle drug will come along before they pass on. They know this might be a 1% chance but they are still allowed to have this hope.
    • Agreed. Dr. Salwitz, with all due respect, I do know and understand that there are patients who don't make the best decisions, or what appear to be the best decision in their particular situation. The problem is that I've had doctors who also were not up on their game at all. I used EBM, and the doctor used ... a combo of his learning/experience from years ago. He had a much more abrasive personality. The doctor told me he would put things in my records to mess up my relationship with other doctors. While in your case, you may have been right, in the patients' eyes, if they don't have a lot of time left, they may have made decisions based on their life that you don't know about. I sure did. My values are totally different from that doctor I talked about. I do have to say thank you for spending time with the patient. Lord knows, I got blown off and given attitude in answers with that doctor (and a couple others), so I truly do appreciate that you were willing to do that. Most kind. Btw, my last "encounter" with all my "data" and resources with my main doc? I was saying here is what I'm coming up with, what do you think of this, what's your opinion on this? In the end the doctor made a decision and I am chasing it up. We made it together, based on the data I had, and their final learning/experience & analysis. I want to know what they think of what I bring, to teach me, to learn. I will make better decisions, we will, because we bring different types of "eyes" on a problem & solve them together. The best of both worlds. My PCP is the best. I just wish I had found them before the problem personalities I had before. Hopefully you will ask about our values & why we do things. They might make more sense to you and help you give us the best of you in your "orders". :)
    • Penny H.
      Exactly! Far too many oncologists are too busy to look up the current research on uncommon diseases, yet are quite willing to disregard a well-informed patient's input, even when the patient virtually hands him/her the research findings. I have spent far too much time learning about my own uncommon diseases to be treated as if I'm the usual "whatever-you-say-I-will-do" patient who hasn't got a clue. The doctor who is quite sure he knows best should beware of falling into the doctor-pride trap.
      • The sad part is that ignoring patients isn't just an oncologist thing. Its called a very bad judge of character. People who are involved in their care do make a physicians life easier because they can be a source of knowledge and help.
    • meyati
      About informed doctors-I just lost part of my vision in my left eye. I rubbed my eye and something cut my cornea-small cut-maybe an eye lash. The Urgent Care doctor prescribed the correct med, but misread, and 4/day and ordered every 4 hours. My optholamologist looked at the bottle and box, checked the EMR, and told me that I should have gone to an ER. I asked her if she could guarantee the ER Dr. wouldn't do the same thing or even give me the correct med. Her shoulders slumped, and she cried, and kept saying that I'm the one patient that follows directions and has common sense and this happened. It's everywhere, not just one specialty. The problem is that I've had far worse than the UC doctor that gave the wrong instructions. We'll see what happens to my vision-there are 4 options, improve, stay the same, get worse, or go blind. One of them will happen.
  • D Someya Reed
    So how does a doctor (an oncologist, in this case) who… - Gave a patient a less than 5% chance of survival (over months, not years) - Ignored patient’s medical history and concerns over extreme sensitivity to previous medications (multiple and near fatal instances); as well as, patient’s overall aversion to chemotherapy - Acknowledged his therapy was the harshest he could possibly prescribe and that the patient would be unlikely to survive it (but added that the patient’s death would further his, the oncologist’s, personal knowledge) - Told the radiologist conducting the patient’s next appointment to (and this according to that radiologist) convince the patient to agree to his chemo regimen thereby not discussing anything regarding radiation treatment at the appointment…I’ve often wondered what power this oncologist had over the radiology dept …fit into this scenario? Perhaps your statement…“Doctors order therapy. Patients consent to therapy. Patients cannot order a physician to give therapy.”…is missing a piece? Patients cannot order therapy from a physician but “some” physicians can and do order unwanted, useless and, by all standards, fatal therapy for a patient and sometimes block the patient from receiving any other competing, but patient desired, therapy. This includes your scenario above and then some. A physician may not always be doing this for the money, as one would first think, but in the physician's belief that his/her therapy is the best choice in a given case. And for some physicians (more than there should be and certainly a holdover of the paternalistic system) "how dare" a patient disagree or accost them with "data" gleaned from any source no matter how respected or relevant. Comments made to a patient that he/she is dying anyway don’t really help and hardly represent joint decision making. There are oh so many ways of saying this very thing but less directly. A rare and anecdotal occurrence you might be thinking but not really so much. How many times do you suppose a physician is thinking (but not saying) ‘This patient is likely to die anyway, let’s throw everything AND the kitchen sink at it...we might get lucky.’ This instance just happened to be more direct. Maybe this type of “directness” is what admitting to being a chemist and toxicologist (the patient) gets you. Or, perhaps, this oncologist just didn’t bother to say, ‘Oh, did I just say all that out loud?’ Obviously, it is sometimes just as important for either the patient and/or physician to just say "No." I believe that some sort of advantage (or benefit of the doubt) should always be given to the patient as they DIDN'T train for this as have physicians. Often, too, many physicians admit that all their training goes out the window when they become patients themselves.
    • +99999999. After having a paternalistic physician say that they would put things to ruin my future doctors' relationships with me, sorry, I can't buy it. Even if the doctor was right, that is an abuse of power. Experts everywhere give their info, it is up to them to let the customer decide. I took a lot of research together to my doc this last go around. I pointed out info, asked them several times what do you think, concerns, etc. They suggested a course of treatment that I agreed to, and am chasing it up. I don't like the treatment. I'm doing it because I respect them, they listened to me, and mind over heart, I think they are making a wise, reasoned decision after carefully considering everything and I will support that. I've had other docs I've disagreed with because I might not like the treatment or not, but if I can see their thoughts and the result is reasonable in terms of medical research, then I'll go with it.
    • cherie79
      That is what happened to a friend of mine. He was not feeling at all ill when he saw the Dr. about some lesions on his back. It turned out to be a very rare blood cancer with a poor prognosis, I think it was BPDCN or something like that. They had only seen one other case in Scotland and I am sure they saw it as an opportunity and threw everything at it. He was not the kind to question Drs. the treatment was dreadful and he really suffered, reduced from a big strong man to a pain wracked skeleton, but he bore it all with good grace in the hope of getting more time with his family. All in vain, when the transplant of his own cells failed he only lived for a couple of weeks, one week at home then rushed back to hospital to die. All in he lasted 10 months and I know, given the likely prognosis, he would have taken maybe six months at home with just palliative care when needed. He was only 64 and put all his faith in the Drs. I am sure they hoped they could save him but must have known it was unlikely but too good an opportunity to miss. Can't blame them for hoping to learn more but it was never properly explained to him and the price was too high.
  • Doctors have different opinions and approaches. Cancer treatment presents many options. That complexity is the dilemma facing the patient. That is the dilemma facing the doctor too. The patient must trust in the doctor to make the right choice among many bad choices. All the optimism in the world does not change the course of cancer's relentless drive if that is how the cancer presents. No one but God knows if the treatment will work. No doctor knows. Maybe someday society will focus on the causes of cancer instead of the multitude of treatment options. We have sadly missed the forest for the trees.
    • D Someya Reed
      Absolutely correct! But why is it that if you attend almost any cancer related presentation or read any number of medical blogs most often there will be a point where the physician (presenting/in charge) states that he/she believes a cure is "imminent" or "right around the corner?" Press any one of them for the facts to back up that assertion/prediction and you'll likely get the "cancer is complex" speech followed by the "we still have much to learn" and "we still need more research" speeches. How does any of this (which only creates false hope) benefit any patient? To be fair, on the other side of the coin, I attend an ongoing breast cancer lecture series, for example. The group that sponsors the series has decided that their way to speed up a cure is to give it a deadline. Now you can claim all the deadlines you want but it's not going to make any difference at all if you don't have the power to enforce it or the knowledge to make it happen. It only creates a symbolic "feel good" period (with a likely let down at the end) or another (now patient/consumer-driven) false hope. Do we really want cancer cure predictions to become no different than the Mayan end of the world (2012 and its sequel in 2015), Viking Ragnarok end of the world (2014), Nostradamus end of the world (2015), assorted asteroid collision predictions (pick a year) or even the end of the world by the newly discovered Zombie Virus...really?...someone is spending time and money on a Zombie Virus or even the determination that it is possible? So there aren't enough real-world issues to deal with? When will we (all) stop making wild, unsupported predictions and spend that effort really doing something about cancer and honestly reporting that progress or lack thereof? Why is this not even considered as the best foundation upon which to build a cure?
  • Evan Stagg
    Dr. Salwitz, Thank you for sharing the story of Ellen and the shifting physician-patient power dynamic. Muchos gracias!!
  • meyati
    I had 2 doctors that didn't say , NO. One wasn't allowed to do the biopsy in the student clinic, so she referred me to about 8 different doctors. They all said-NO, you can't tell me how to practice. 8 years later a doctor did what I wanted, and sent me to a trusted friend. She ended up getting a cancer positive result. On the second biopsy, to try to get a clear edge, I lost some of my upper lip-not much, some nasal and sinus bone which was cancer free, a strip of flesh between my nose and lip-she had to cut out the new visible cancer tumors that popped up from the biopsy, I lost the side of my nose, part of my cheek became my lip, and she told me that chemo didn't work at all. I know that I wouldn't have seen you on those many visits before the biopsy, but I wish that someone would have humored me.

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